Claire Wineland, a beloved social media star who became famous for her positive outlook as she documented her lifelong struggle with cystic fibrosis, passed away on Sunday evening at the age of 21. Wineland, who had spent about a quarter of her life in the hospital, died from a massive stroke she suffered after undergoing a double-lung transplant just a week earlier.
There is no cure for cystic fibrosis, a genetic disease of the lungs that afflicts more than 30,000 people in the U.S. alone and whose sufferers live to a median age of just 40 years, and Wineland’s unusually mature and measured approach to her mortality had served as an inspiration to people around the world. At the age of 13, following a medical flare-up that left her in a coma for 16 days, the young activist founded the Claire’s Place Foundation to help support families caring for children with cystic fibrosis. Just last year, Wineland gave a TEDx Talk in which she explained that having to stare her own mortality in the face made her realize that “life isn’t just about being happy … it’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given.”
Claire’s mother, Melissa Nordquist Yeager, recalled a similar conversation with her daughter.
“After you die, you’re closer to everyone you love because you’re part of everything,” Wineland told her mother.
Wineland had long resisted undergoing a double-lung surgery that had the potential to extend her life, but after a deep decline in her health left her bedridden she decided to go ahead with the procedure. The nine-hour surgery initially went well, but shortly afterward she suffered a stroke and never awoke from a medically-induced coma. She took her last breath with her parents by her side. In a final act of charity, Wineland had also signed up as an organ donor. Yeager said that she had already received an email explaining that her daughter’s decision to donate her organs had already saved the lives of two people in need of kidney transplants.
Shortly before her death, the usually cheery teenager was tearful as she acknowledged that despite her longtime attempts to come to acceptance with death, she was still desperate to continue living.
“Go enjoy your life,” she told her followers. “Really. I mean that seriously. Go enjoy it, ’cause there are people fighting like hell for it.”
Click here to read a tribute to Wineland posted by the president of her foundation, Laura McHolm, and for more on Wineland’s life and death, watch the video below.
Read the full story at CNN.